Today is a good day for Alida Brill: She isn’t in pain. Her body isn’t covered in rashes. And she’s not so tired she has to spend the day in bed.

Tomorrow, on the other hand, may be another story.

“Think of the worst toothache you’ve ever had in your life, then think of your entire body reverberating with that pain everywhere,” said Brill, 60, a Lakewood native who has battled chronic autoimmune disease since she was 12. “It’s all these things at once.”

Over the years, Brill has tried various medications and forms of treatment – gold shots, Indocin, Prednisone, immunosuppressants, anti-cancer drugs, antibiotics, infusion treatments, meditation. But the illness remains.

And so she writes.

“Yes, it is very hard to write when I am unwell because it often bothers my hands or the pain is just raging through me,” said Brill, a longtime social activist who recently published her fourth book, “Dancing at the River’s Edge: A Patient and Her Doctor Negotiate a Life With Chronic Illness” (Schaffner Press).

In the book, Brill chronicles her 30-year relationship with her physician, Dr. Michael Lockshin.

“At the end of the day, the writing is what enables me to say, `Yeah, I’m ready to keep trying this. I’m ready to keep going forward,”‘ she said.

The book doesn’t just tell Brill’s story; it tells her doctor’s, too. Co-written by the New York rheumatologist, the chapters alternate between his and her points of view.

It’s an approach that reveals both sides of a disease: the day-to-day struggles of the patient and the concerns and conflicts of her doctor.

“I thought other people who are chronically ill needed to see a different model than they may be experiencing in doctor-patient conversation,” said Brill, who now lives in the Los Feliz district of Los Angeles. “I have the most extraordinary doctor.”

Brill was almost 30 when, after being shuffled from doctor to doctor, prescription to prescription in search of answers, she met Lockshin.

From their first meeting, she said, she noticed something different about him. Namely, he listened to her. He wanted to understand.

“There was trust,” she said. “We can negotiate. We can talk.”

Living with chronic illness

Since doctors don’t fully understand what causes chronic autoimmune disease – and because symptoms mimic those of other illnesses – patients are often misdiagnosed.

Doctors initially told Brill, for instance, that she had rheumatoid arthritis. Later, they suspected lupus.

She was eventually diagnosed with Wegener’s granulomatosis, a rare disorder that causes inflammation of the blood vessels and blood flow restriction to various organs.

It is a disease from which she’ll likely never fully recover, and the symptoms range from fever and lethargy to rashes and extreme all-over pain.

“I can’t medicate, meditate, exercise, diet, or deny myself out of my medical status; I am a person with chronic illness,” Brill writes in the book. “There are no mental powers or psychological tricks available that will eliminate this fundamental truth.”

As difficult as it is for the patient, it isn’t easy for her doctor, either. Patients don’t ever really get “better” from autoimmune disease. All a doctor can do is alleviate the symptoms.

“`Better’ is a very broad term. You can relieve pain, you can get them more mobile, you can assist them in activities in their daily life,” said Lockshin, who treats hundreds of chronically ill patients a year and admits he is “emotionally attached” to all of them. “That’s why my definition of rheumatology is those physicians best able to live with uncertainty.”

A tool for teaching

Brill and Lockshin said they hope “Dancing at the River’s Edge” will help young doctors learn to avoid what Lockshin calls “white coat syndrome.”

“I’m aware of colleagues of mine who work very hard never to know their patients because they think that’s the right thing to do,” Lockshin said. “I work with a lot of surgeons who only want to get to know a patient on an anatomical basis.”

Lockshin said doctors shouldn’t be so focused on finding a diagnosis that they ignore their patient, valuing blood work and other scientific “evidence” over a patient’s own words.

“Not being involved with the patients and not hearing what they’re saying is a big part of the problem,” he said. “Doctors are taught to look at the labs and the objective evidence and make decisions based on that.”

Patients can learn from the book, too. Brill said her journey with illness has taught her how to embrace life.

“When I was younger, I believed my disease was my enemy and I was determined that I was going to outfox it, outrun it, outwit it,” she said. “At some point I understood that to live with it and not let it define me, I had to embrace it. Because in those moments that you can embrace the reality of your disease – no matter how much pain you’re in – you get a different kind of strength to go on.”

Of course, Brill wouldn’t have written the book if she didn’t hope it would help others like herself.

She based the book’s title on the last stanza of a poem she wrote 10 years ago:

Don’t push the river, it flows by itself.

it flows above us, and beneath us,

but in the middle, we dance in the moonlight

– at the river’s edge.

It’s a metaphor that, for Brill, was decades in the making.

“What I’m saying is that even when you feel like you’re drowning – when you’ve got water above you and water below you and you’re drowning – you can still find your riverbank and you can dance in the moonlight.

“It’s the dance of life.”

Book signing

Alida Brill will sign copies of “Dancing at the River’s Edge: A Patient and Her Doctor Negotiate a Life With Chronic Illness” from 2 to 4 p.m. Saturday at Barnes & Noble Booksellers, at the Long Beach Towne Center, 7651 Carson Blvd. For information, call 562-938-8330.